Woman with rare lung disease fights for drug

Debbie Mullins says without access to a new drug, she will die of a rare lung disease. (Jeremy Eaton/CBC)

A Corner Brook woman with a rare lung disease is upset that she can't get coverage for a new drug that could save her life.

Debbie Mullins has idiopathic pulmonary fibrosis, a disease which causes the lungs to scar and stiffen, making it harder to breathe. Her father and older brother have already died of the disease, and her younger brother also lives with it.

Mullins said a new drug which can help her breathe, called Esbriet and known generically as pirfenidone, became available in January 2013. She has received a prescription for a six-month supply.

But Mullins said her husband's insurance company will not cover it.

"[The drug costs] almost $4,000 a month, which would be almost $40,000 a year, and my husband don't make that much money, and I can't work," she said.

Mullins has called her MHA, who has spoken with the province's health minister. Mullins also called the company which makes the drug, but she has not been able to receive any assistance.

Drug study helped

Mullins took part in a study a few years back, and said her health improved while she was on the experimental drug. However, when the study ended, so did her access to the medication.

She said after that, her health declined again.

"Right now my next step is going to be oxygen because I can't breathe very well," said Mullins. "If I go on oxygen, I'm not gonna live very long."

Mullins said she's furious with the situation.

"We paid insurance all of our life and now I need a drug, I can't get it. It's not covered. It's not fair at all."

Coverage varies

Robert Davidson, president of the Canadian Pulmonary Fibrosis Foundation, a support group for patients with idiopathic pulmonary fibrosis, said some insurance plans will pay for Esbriet, and others won't. He added that provincial catastrophic drug programs have been slow to cover the new drug.

"And we can't wait another month, because that's another 100 people dead."

Davidson said he doesn't blame the drug's manufacturer, because rare disease research is costly and often does not pay off.

Federal, provincial cost-sharing stalled

In 2006, the federal and provincial governments agreed to co-ordinate so-called catastrophic drug coverage for rare diseases to speed up the approval process, but disagreement over cost-sharing for a national pharmaceutical strategy has stalled those plans.

A spokesperson for the province's health department said on Tuesday that the government hasn't made a final decision on whether to cover the drug.

Mullins said her only other option would be a double lung transplant, which she said would involve major health risks that she's reluctant to take.

"I know I'm getting worse. And I'm dying," she said.

Mullins says she'll use every bit of breath she has to keep fighting for coverage for the new drug.